Access to general health care among people with disabilities in Latin America and the Caribbean: a systematic review of quantitative research

Summary In Latin America and the Caribbean (LAC), there are 85 million people with disabilities (PwD). They often experience barriers accessing healthcare and die, on average, 10–20 years earlier than those without disabilities. This study aimed to systematically review the quantitative literature on access to general healthcare among PwD, compared to those without disabilities, in LAC. A systematic review and narrative synthesis was conducted. We searched in EMBASE, MEDLINE, LILACS, MedCarib, PsycINFO, SciELO, CINAHL, and Web of Science. Eligible articles were peer-reviewed, published between January 2000 and April 2023, and compared healthcare access (utilization, coverage, quality, affordability) between PwD and without disabilities in LAC. The search retrieved 16,538 records and 30 studies were included, most of which had a medium or high risk of bias (n = 23; 76%). Overall, the studies indicated that PwD use healthcare services more than those without disabilities. Some evidence indicated that women with disabilities were less likely to have received cancer screening. Limited evidence showed that health services affordability and quality were lower among PwD. In LAC, PwD appear to experience health inequities, although large gaps exist in the current evidence. Harmonization of disability and health access data collection is urgently needed to address this issue.


Introduction
Worldwide, there are 1.3 billion people with disabilities, a diverse group of persons with long lasting physical, mental, intellectual or sensory impairments who often face various barriers that restrict them from an equal participation in society. 1,2This number is expected to increase further in the coming decades due to population ageing and the rise of chronic diseases. 1People with disabilities often have greater health needs than the general population because of baseline health conditions and increased comorbidities. 1,3However, they also frequently lack access to essential and high-quality health services due to several system-and individuallevel barriers, which further increase health inequities. 34][5] While transport and substantial additional living costs, as well as low autonomy and awareness of access to healthcare, are some of the barriers people with disabilities face at the individual level. 1,4Consequently, people with disabilities frequently have poorer health and on average die 10-20 years earlier than those without disabilities, even under circumstances that could have been avoided. 1,4,6This life expectancy gap is even higher among low-and middle-income countries (LMICs). 6This is why member states of the United Nations (UN) recently committed to disability inclusion in healthcare systems, including essential health services and public health interventions. 7right and Kuper (2018) explored English quantitative research on access to general healthcare services for people with disabilities in LMICs between 1995 and 2015. 8General healthcare corresponded to essential health services (eg, antenatal care, immunization, etc.), excluding specialist health services.The included articles used a wide range of disability and healthcare access outcomes and 46% of included studies had medium or high risk of bias, restricting the possibility to draw robust conclusions. 8Since this systematic review, further reviews have looked at the qualitative evidence, 9 barriers to access healthcare, 10 or access for specific types of disabilities. 11fter Europe, the Americas have the highest prevalence of disability globally (19%) 1 and about 85 million (15%) people have disabilities in Latin America and the Caribbean (LAC). 12The LAC region represents a diverse set of countries with important sub-regional socio-economic and health differences.In general, central America has the highest poverty rates, in contrast to the Southern Cone, although the entire region has consistently been characterized by inequality. 12In most countries of LAC, primary healthcare is delivered by public health providers, although countries differ in their organization of basic health coverage. 13For instance, some countries have national health systems (Belize, Brazil, Ecuador, El Salvador, Guyana, Honduras, Jamaica, Panama, Paraguay and Trinidad and Tobago), while others have contributory health coverage with multiple insurers (Bolivia, Chile, Colombia, Dominican Republic, Guatemala, Mexico, Peru, Suriname). 13Furthermore, most countries protect populations with low-income against out-of-pocket payments and catastrophic health spending, but rarely other vulnerable groups. 13Some well-known structural weaknesses in the health systems in LAC include fragmentation (both between public and private health systems, and within public healthcare), inequality in health access, financial constrains (eg, lowest health spending in Haiti, Venezuela, and Honduras), and lack of human resources and infrastructure. 14,15isability can overlap with multiple vulnerabilities of other groups such as women, children, elderly, ethnic minorities, LGBTI+ people and migrants, whose representation varies widely across LAC. 12 Yet, analysis on healthcare access with disability lens remains scarce.This review will respond to the current call of UN member states to document health inequities experienced by all people with disabilities and further build evidence on healthcare access for LAC. 7More than ten years have passed since the Pan American Health Organization established a regional strategy to improve disability data 5 and, despite the efforts to overcome this statistical invisibility, robust diagnostic analyses are still needed. 12The COVID-19 pandemic revealed the still poor and unsystematic information about people with disabilities and healthcare. 16Thus, an in depth and systematic analysis will help identify the evidence available and the remaining data gaps in healthcare access (utilization, coverage, quality, and affordability of health services). 17e research question addressed by this review is whether people with disabilities experience inequalities in access to healthcare in Latin America and the Caribbean.The aim of this study is to systematically review the quantitative literature on access to general healthcare among persons with disabilities, compared to those without disabilities, in LAC.This systematic review will improve upon the previous review of Bright  and Kuper (2018) by capturing recent evidence and trends in access to general healthcare and including high-income countries of LAC and non-English studies, which have been previously excluded from systematic reviews. 8,9

Methods
This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines 18 (Supplementary Material 1) and was registered in the Prospective Register of Systematic Reviews (PROSPERO) under the following number: CRD42021235797.

Search strategy and selection criteria
Studies were eligible if they were peer-reviewed articles of quantitative research with interventional or observational study designs (eg, cohorts, case-control, crosssectional, etc.) carried out in Latin American and Caribbean countries, as defined by the World Bank in 2023. 19They must have been published since 2000 onwards and written in English, Spanish, Portuguese, French, or Dutch.Quantitative sections from mixed methods studies were considered.Qualitative studies, studies conducted outside LAC or multi-country studies that did not provide disaggregation for a country in LAC were excluded as well as editorials, commentaries, letters to the editor, systematic reviews, case reports, study protocols, conference abstracts, and grey literature.
Participants were people with disabilities of any gender and age group, including those who have longterm physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. 2 Disability was defined in the study according to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), the International Classification of Functioning, Disability and Health or the Social Model of Disability.It included people with specific conditions deemed likely to result in disability (eg, dementia, spina bifida, schizophrenia, etc., as listed in Iemmi et al., 2015)  20 as well as disability measured through functioning or activity limitations (eg, Washington Group questions, activities of daily living).We excluded people with mild disabilities (eg, symptoms of depression alone rather than clinical diagnosis or major depressive disorder, some difficulty in one activity of daily living/functioning domain or mild cognitive difficulties).
Eligible studies had to include one of the following measures of access to healthcare: coverage, utilization, quality, and affordability of health services.This conceptualization was based on the World Health Organization's definition of universal health coverage and its progress monitoring indicators of coverage of essential health services. 17,21Among eligible studies, we also included the following secondary outcomes if available: adherence to health treatment or barriers to accessing healthcare.Outcomes could be measured within any type of general health services.The studies must have had a comparison group of people without disabilities and report measures of effect comparing people with and without disabilities.
Peer-reviewed published articles were searched on April 12th, 2023, through eight databases: EMBASE, MEDLINE, LILACS, MedCarib, PsycINFO, SciELO, CINAHL, and Web of Science.In addition, the reference lists of relevant systematic reviews were checked to identify potential articles.No language restrictions were applied; however, a date filter was applied to identify papers published after 2000.Comprehensive search strings were built with keywords and thesaurus and MeSH terms.Search terms were also identified in the full manuscript of other reviews of similar topics.The search was also conducted in Spanish and Portuguese, as these are the two main regional languages.An information specialist of London School of Hygiene and Tropical Medicine reviewed and approved the search strategy (Supplementary Material 2).
Two reviewers independently screened study titles, abstracts, and full text against the eligibility criteria.They then compared results and reached a consensus at each stage.A third reviewer resolved uncertainty or disagreement.Rayyan software was used for screening articles and recording decisions. 22

Data analysis
Two reviewers independently extracted data of studies selected and agreed on results.A third reviewer resolved any disagreement between individual judgements.From each article the following information was extracted: citation details, study location, study design, participant characteristics (sex, age group, type of disability and method of assessment), outcome measures and method of assessment, results among participants with and without disabilities, summary of results (eg, measures of effect), type of health service used, barriers to healthcare and quality measures.Data extracted were recorded in a Microsoft Excel spreadsheet.
A narrative synthesis was conducted on each type of outcome of access to healthcare.Summary of results with measures of effect (eg, prevalence ratios with 95% confidence intervals [CI]) presented as unadjusted, agesex adjusted and/or multivariable adjusted or mean with standard deviation were collected.Results were organised in subgroups according to outcome measurements and thereafter according to type of

Risk of bias LOW:
All or almost all of the above criteria were fulfilled, and those that were not fulfilled were thought unlikely to alter the conclusions of the study MEDIUM: Some of the above criteria were fulfilled, and those not fulfilled were thought unlikely to alter the conclusions of the study HIGH: Few or no criteria were fulfilled, and the conclusions of the study were thought likely or very likely to alter with their inclusion.impairment (mental, physical, sensory, intellectual, or multiple impairments).Finally, a meta-analysis was intended for synthesis of results in case of sufficient homogeneity in healthcare access outcomes and across disability-specific groups.
Included studies were independently checked against quality criteria and then assessed for risk of bias by two reviewers using an adaptation of the SIGN50 guidelines. 23Risk of bias was assessed through the study design, participants, outcomes and data analysis and additional criteria were available for case-control and cohort studies regarding the comparability of the groups and study design (Table 1).Any disagreement was discussed together with a third reviewer.Each study was graded as low, medium, or high risk of bias, depending on the criteria fulfilled and the possibility of altering the conclusions of the study.Studies with high risk of bias were excluded from the analysis of health outcomes.

Results
The initial search retrieved 16,534 records.5][26][27] After deduplication, the titles and abstracts of 10,927 articles were independently screened.Then, 191 articles were fully screened and finally, 30 studies were included in this systematic review (Fig. 1); of which 8 had been also previously included in Bright and Kuper's (2018) review. 8able 2 shows the main characteristics of the articles included.Most studies had a cross-sectional design (n = 24; 80%), were conducted in Brazil (n = 19; 63%) and in urban areas (n = 19; 63%).Articles were most frequently published in English language (n = 23; 77%) and from 2010 onwards (n = 27; 90%).Most participants were adults (n = 14; 47%) or of mixed age groups (n = 13; 43%).Participants often had any type of selfreported disability (n = 8; 26%) or functioning limitations (n = 8; 26%).Utilisation of healthcare was the most frequent outcome reported (n = 20; 63%) (Fig. 2).Health services often were outpatient visits (n = 16; 31%) and health treatment or medication (n = 12; 24%).The quality assessment revealed that most studies had a medium risk of bias (n = 16; 53%).][30][31][32][33] A meta-analysis could not be performed since there was not sufficient homogeneity in the measurement of disability and healthcare access outcomes.Disability was self-reported, measured through questionnaires, clinical assessments or identified in medical or school records (Table 3).Most studies collected data under a biomedical model of disability (ie, categorised disability according to the presence of impairments or medical conditions) (n = 22; 73%).Most healthcare outcomes were collected through questionnaires and were applied during inperson interviews; only two studies collected data from patient's records within the last 12 months. 46,52However, healthcare outcomes were measured by different types of services and period (Table 4).
Table 4 shows the summary of outcomes measured, where 17 studies examined differences in healthcare utilization between people with and without disabilities.Nine studies (53%)-eight cross sectional studies and one cohort study-reported strong evidence of a higher utilization among people with disabilities (outpatient visits or hospitalizations). 39,45-52However, two studies indicated that people with disabilities utilized oral health services less often than people without disabilities. 37,53hree studies (18%) found some evidence of mixed utilization levels. 34,35,38][47][48][49][50][51] Studies without significant results showed a trend towards either higher (n = 2) or mixed (n = 1) utilization levels among people with disabilities. 40,41,43overage of key services was examined in five studies, and three found statistically significant differences by disability status among women.For example, women with disabilities had lower coverage of preventive health services such as cancer screening, gynaecological check-ups and antenatal care than those without disabilities. 27,42,51The rest of the studies indicated either no differences or lower coverage levels. 25,26Furthermore, the two cross-sectional studies reporting on affordability revealed that people with disabilities had more difficulties affording health services or had catastrophic health expenditures than persons or households without disabilities. 36,44Finally, a case-control study in Guatemala reported that the quality of healthcare services was lower among people with functional limitations than those without.They found that people with disabilities felt disrespected or found it difficult to understand the information given during a health treatment than people without disabilities. 42o cross-sectional studies reported additional disaggregation by age, gender, and level of severity.8 Finally, although some studies adjusted their analyses by ethnicity, disaggregated results by indigenous people or afro-descendants were not found among included studies.Four studies-two case-controls 41,42 and two crosssectional studies 27,36 -reported barriers to access healthcare services.People with disabilities faced about 2-4 times more difficulties with the availability of health services 41,42 and access to health facilities (age-sexadjusted odds ratio [OR] (95% CI) = 4.4 (1.9-10.2)),than those without disabilities. 41They also reported difficulties in arriving at health facilities (aOR 2.95 (2.72-3.20)),being attended (aOR 1.72 (1.61-1.84)),or obtaining a doctor's appointment (aOR = 1.83 (1.72-1.94)). 36Women with disabilities also believed that cancer screening tests did not apply to them (26-34%) or that they did not need them (around 26%). 27ig. 3 presents the risk of bias assessment for each study.Studies had low (n = 7; 23%), medium (n = 16; 53%) and high (n = 7; 23%) risk of bias (Fig. 3).Almost all studies (n = 28; 90%) presented a health access measure clearly defined in the methods section and confidence intervals or standard deviations in the results (n = 26; 87%).However, sample size calculations were often not reported in the paper or incomplete (n = 25; 83%).Similarly, response rates were often not reported (n = 14; 47%).Generally, case-control studies (n = 5) had comparable and clearly defined cases and controls.

Discussion
This systematic review included 30 studies of quantitative evidence on general healthcare access among people with and without disabilities in Latin America and the Caribbean.Many studies indicated that people with disabilities use healthcare services more than those without disabilities.The few studies reporting on healthcare coverage had inconsistent results, although, there was some evidence that women with disabilities were less likely to have received cancer screening than those without disabilities.Both the affordability and quality of health services were reported to be lower among people with disabilities than those without.Overall, the evidence suggests that people with disabilities may experience health inequities in LAC.
Our results are consistent with other systematic reviews that found that people with disabilities more frequently use primary care services, outpatient care or are admitted to the hospital than those without disabilities. 8,11However, the two studies reporting on oral health services found a lower use among people with disabilities, especially among those with severe limitations, and people with rare genetic diseases. 37,53urthermore, health coverage appeared to be limited for some services.Two studies found that women with disabilities have lower coverage of cancer screening than those without disabilities. 27,51Similar findings were reported in a meta-analysis within high-income settings, where women with disabilities were less likely to have breast (22%) or cervical (33%) cancer screening than  those without disabilities. 54People with disabilities face barriers in accessing sexual and reproductive health services; for instance, in sub-Saharan Africa they face inaccessible physical health infrastructure, stigma and discrimination across different levels. 10However, only limited interventions exist to promote sexual and reproductive health among this population in LMICs. 55urther analyses on healthcare coverage are needed, including a wider range of preventive services (eg, family planning, HIV, immunization, chronic diseases, etc.).Despite the finding of higher utilisation, people with disabilities might not have access to affordable or quality healthcare.Only two studies reported on affordability of healthcare.In comparison to those without disabilities, our findings suggest that people with disabilities find it difficult to afford services or face catastrophic health expenditures. 36,44Previous systematic reviews, also found some evidence of higher health expenditures for people with disabilities 8,56 and a strong association between disability and poverty in LMICs. 57Catastrophic health expenditures and additional living costs among people with disabilities and their families might be particularly problematic in LAC, where household wages remain limited. 1,5,12,56Very little evidence was available on quality of healthcare.One study found that people with disabilities felt disrespected or reported that health information was difficult to understand. 42A meta-synthesis of qualitative evidence in LMICs highlighted that health worker attitudes and health information are common barriers faced by people with disabilities when accessing primary healthcare. 9Similarly, a global synthesis of qualitative evidence found that women with disabilities encounter lack of communication tools in health centres and lack of appropriate skills and training among health providers. 58raining of health workers is essential to improve the healthcare experience 1 and according to a recent review, sustained learning with multiple teaching methods and participation of people with disabilities could be a successful disability training model. 59Additional evidence on affordability of health services is key to inform policy required on financial protection measures tailored to the LAC region.Similarly, evidence on the quality of healthcare is essential to monitor the effectiveness of the interventions, which should respond to the specific needs of people with disabilities to improve wellbeing, quality of life and participation in society.
This systematic review has some limitations that should be considered.Most studies were conducted in Brazil (n = 19; 63%); thus, findings may reflect to a large extend Brazil's context and limit the generalizability to other countries in the LAC region.Furthermore, most studies had a cross-sectional design which restricts the possibility to analyse causal paths between disability and healthcare access.Moreover, many studies (n = 25; 83%) partially presented or did not report sample size calculations and therefore, we could not assess their power    and likelihood of reporting extreme results.There was a high level of heterogeneity in the measurement of disability and healthcare access, which made comparison across studies difficult.Although countries included in this review ratified the UNCRPD, most data were collected under a biomedical model of disability, despite the call for supporting both the individual and social dimension of disability. 60Additionally, both disability and healthcare access outcomes were often selfreported.This could imply a risk of reporting bias among participants and further limit the robustness of the evidence.We also excluded participants with mild disabilities (eg, depressive symptoms alone) and despite these being systematically excluded, we could have introduced some selection bias by trying to differentiate mild from severe disabilities.Moreover, our review did not include grey literature and might have some level of publication bias.
Although the joint analysis of all people with disabilities reinforces the issue of health equity faced by this group, disability is diverse.Health needs vary by several factors (eg, health conditions, impairment type, age, gender, environment, residence, etc.) and even throughout the lifecourse. 1 Healthcare access among people with intellectual or learning disabilities was likely under-represented in this review.This finding supports the urgent call to improve data collection on people with intellectual and psychosocial disabilities, including in the LAC region. 12Similarly, other groups of people with disabilities are not represented in this analysis.For instance, people living in large institutional settings such as care homes, prisons, etc., which have been found to be often excluded from censuses and household surveys in Latin America and the Caribbean. 12urthermore, disability could overlap with vulnerabilities of other minority groups (eg, indigenous people, afro-descendants, migrants, etc.) and due to lack of data, an intersectional analysis could not be conducted. 12uture studies should report on healthcare access among people with disabilities by gender, impairment type, residence, and intersecting identities.
Despite these limitations, we present the most comprehensive literature and analysis from a region with limited evidence available.This systematic review has important strengths.We registered a study protocol and conducted the search strategy in several languages (English, Spanish and Portuguese).We also searched for studies in multiple databases and independently assessed information.In contrast with Bright and Kuper's and other previous reviews, 8,9 our analysis included 23% of studies in non-English language (n = 7) and 17% from high-income countries (n = 5), which would have not been included in other reviews.
In conclusion, people with disabilities appear to experience health inequities related to general healthcare access in Latin America and the Caribbean.Our findings provide some evidence that confirms the higher utilization of healthcare among people with disabilities in LAC, than those without disabilities.But important data and quality gaps exist in current research, especially in coverage, affordability, and quality of healthcare.Further harmonization of disability and health access data collection is urgently needed to assess health equity among populations with and without disability, including those with invisible disabilities.A health research agenda going forward on health equity and universal health coverage will facilitate evidence-based policy making in inclusive health for people with disabilities in Latin America and the Caribbean.

Data sharing statement
The protocol of this systematic review can be found in PROSPERO under the following number: CRD42021235797.

Declaration of interests
We declare no competing interests.

Contributors
DRG, HK and LMB conceived the study.DRG developed the search strategy and conducted the search.DRG, HK, LMB, SR, KA, and VR conducted the first and second screenings of titles and abstracts.DRG, HK, LMB, and KA performed full text screening.DRG, SR, and KA conducted data extraction and bias evaluation.DRG wrote and revised the manuscript drafts.All authors made intellectual contributions and critically reviewed and accepted the final manuscript before its submission.
None of the eligible studies were found in French or Dutch language.d There is more than one type of disability reported in Albanese, 2011.e More than one outcome was reported in Kuper, 2018 and Fuentes-López, 2020.f More than one type of service reported in some papers.g Including: medical consultations, physician visits, GP appointments, home visits, emergency consultations.
c h Including: antenatal care, immunization, routine check-up, PAP test, mammogram, HIV/AIDS test, prostate cancer screening.

Table 3 :
Summary information of included studies by disability type (n = 30).